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And these are the ones they know about...what about everyone else?It's time for mandatory testing for everyone because too many people won't do it. They go on infcting others...how many of you were infected by someone else? Someone that shold have known.

Alternatively it's time for decent, affordable health care and promotion of easy access and routine testing.

That people in the US can't get timely treatment til they are nearly dead if they are poor or underinsured, and sometimes have to wait for it, is akin to medical slavery to my my mind. There is really no evidence that people with untreated AIDS "go on infecting others" as a rule. They's prob too poorly to go out and score in a big way.

Alternatively it's time for decent, affordable health care and promotion of easy access and routine testing.

That people in the US can't get timely treatment til they are nearly dead if they are poor or underinsured, and sometimes have to wait for it, is akin to medical slavery to my my mind. There is really no evidence that people with untreated AIDS "go on infecting others" as a rule. They's prob too poorly to go out and score in a big way.

I was actually commenting about his statement that poor people in the US have to be near death before they can get treatment. Even with the problems regarding the uninsured, that statement is a bit wild.

While it's an interesting article, I think the numbers are bogus and miscalculated, and the article is poorly written. But I've always doubted the "1.1 million" number as just a bad projection of the CDC.

"About 236,400 of the 1.1 million people infected with HIV have not been diagnosed, the CDC says. People who don't know they have HIV are believed to transmit the virus to half of the 56,000 people who become infected each year." What bullshit. Did they watch them having sex to know how often they did it?

If we KNOW there are diagnosed cases of (1.1M - 236,400 = 863,600), we also know these are the people usually trying NOT to infect others. If 56,000 NEW diagnoses come to light each year, then the projections of who is having sex (the 236,400) and how often is just stupid. I don't believe a group of 236,400 is having so much sex that every 4th person they fuck gets HIV, and they're fucking someone new so often. It's just not that easy to transmit. I would postulate that there are really another 800,000 or more undiagnosed cases, and the CDC is afraid to tell us that so they underplay the calculation. It's just politically not a good thing. The 6.5% rate of growth of HIV in the US simply means we discover 6.5% of those infected, either because they got sick, or because it was part of their usual healthcare (probably the former rather than the later).

As purient as the U.S. is about sex, I don't think the average person with undiagnosed HIV (the supposed 236,400) is having so much sex that they can infect 56,000 each year. If it takes 10 years from infection to death in untreated HIV, then we would discover about 10% of that population on average each year as they get to that endpoint. That would mean, minimally, 560,000 would have undiagnosed HIV.

Anyone else thought about these numbers and questioned the CDC? Or should I just have another drink and sit down.

Alternatively it's time for decent, affordable health care and promotion of easy access and routine testing.

That people in the US can't get timely treatment til they are nearly dead if they are poor or underinsured, and sometimes have to wait for it, is akin to medical slavery to my my mind. There is really no evidence that people with untreated AIDS "go on infecting others" as a rule. They's prob too poorly to go out and score in a big way.

Now where's my "D+D free only" seat of the bus?

- matt

Maybe those that have progressed to AIDS don't go around infecting others, but there's a very good chance that I did before I tested positive. I certainly didn't do it intentionally, as I was unaware of my positive status, but the fact remains that I probably did.

I totally agree about the need for affordable health care. Otherwise, there's little point in knowing one's positive if there's no treatment. I guess one could just hide away and avoid any sort of possibility of infecting others, but that's not likely either. It's definitely a shitty situation for those who don't have insurance and don't qualify for ADAP (and often shitty for those who do due to the varying quality of their providers).

I was actually commenting about his statement that poor people in the US have to be near death before they can get treatment. Even with the problems regarding the uninsured, that statement is a bit wild.

I read that he said poorly, not poor in that they are doing so un-well that they're not gonna go out and score.

I was actually commenting about his statement that poor people in the US have to be near death before they can get treatment. Even with the problems regarding the uninsured, that statement is a bit wild.

It may sound a bit wild Bug but we have heard it many times in these forums over the years, the lack of money is killing people, I'm sure it affects some States more than others, but I admit I'm not that up to date on your health system...it's a very sad situation for a lot of people.

I'm sorry if I misunderstood. You are right that it varys by state how the uninsured in the US receive treatment. In the city I live in the largest HIV clinic here treats everyone including the uninsured regardless of their ability to pay. They also follow all US treatment guidlines so that people receive treatment when its recommended.

However, the state I live in doesnt have any waitlists for adap the way some other states do.

I was actually commenting about his statement that poor people in the US have to be near death before they can get treatment. Even with the problems regarding the uninsured, that statement is a bit wild.

actually the very poor have better access to treatment because they are frequently eligible for state medicaid. (they just have to be poor; being "nearly dead" is not a qualifier to get medicaid) It's the working poor with little or no insurance that have trouble accessing healthcare. For these working poor, ADAP allows them to have access to meds that they wouldn't be able to afford otherwise - which is why ADAP is such an important program.

There is really no evidence that people with untreated AIDS "go on infecting others" as a rule.

I also took issue with this statement. Many of these people progressing to AIDS in 1 yr after diagnosis have gone years living a "normal" life without health issues continuing to have sex, quite possibly infecting others. Many people that take 5 to 10 yrs after infection before getting diagnosed spent years possibly infecting others. While those who know their status are less likely to infect others (because they take precautions to NOT to spread HIV and to serosort), it's these people who do not know their status that are more likely to continue spreading HIV until their health declines to a point at which they are diagnosed late.

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

I definitely agree that it is important for those who are sexually active to be aware of their status, but it has to be voluntary, consensual testing - not mandatory, forced testing. As discussed in another thread, it is important that access to treatment is provided.

A recent newsfeed story that is still posted on poz.com discusses Medicaid expanding coverage in some states for expanded HIV/AIDS programs. The letter that is attached to the article states:

It is imperative that if we want to encourage people to get tested and know their status, that we make sure that they also have access to treatment. Unfortunately, for many people, this is not the case.

First, and foremost, as Ann always says, responsible adults know that it is of utmost importance that they use condoms - particularly if they do not know the status of their partner. Testing and knowing ones status is not going to stop HIV from spreading. Testing, knowing ones status, and receiving treatment also is not going to stop HIV from spreading (although both can have a positive impact) ---- practicing safe sex is the surest way of stopping or severely slowing the spread of the disease ----- "it really is that simple." (Right Ann? )

As purient as the U.S. is about sex, I don't think the average person with undiagnosed HIV (the supposed 236,400) is having so much sex that they can infect 56,000 each year. If it takes 10 years from infection to death in untreated HIV, then we would discover about 10% of that population on average each year as they get to that endpoint. That would mean, minimally, 560,000 would have undiagnosed HIV.

Anyone else thought about these numbers and questioned the CDC? Or should I just have another drink and sit down.

Richie

That is an interesting way to think about the size of the undiagnosed population. But the actual stats are that about one third are diagnosed very late (like me!). So if we used very late as a rough proxy for 10 years then we'd be getting a long term undiagnosed population of one third of your number which is a little under 190,000. Since the other 2/3rds are diagnosed earlier we might assume they are at the halfway point and estimate 5 years of infection for another 180,000 or so, which totals to 370,00 people.

If one test the assumptions at 8 years to AIDS and 4 years for the halfway mark, you get about 300,000 as an estimate of the undiagnosed.

There are a lot of implicit assumptions in that model, but it would not be an unreasonable way to think about a steady state population model. In real life there's been a lot of work on increased testing, and accounting for that you'd expect a lower number -- heterogeneity in outcomes probably lowers the number too.

So basically, fixing the assumption about when people are diagnosed to better reflect actual data in your steady state model comes up with 300-370K people vs a more sophisticated model that comes up with a little under 240K people. In essence, the CDC number looks pretty good.

A

edited to add -- I'd be glad to buy you a drink and sit down to discuss model building. Sounds like my idea of fun

actually the very poor have better access to treatment because they are frequently eligible for state medicaid. (they just have to be poor; being "nearly dead" is not a qualifier to get medicaid) It's the working poor with little or no insurance that have trouble accessing healthcare. For these working poor, ADAP allows them to have access to meds that they wouldn't be able to afford otherwise - which is why ADAP is such an important program.

In fact that has not been uniformly true in the past. Medicaid is a joint federal / state program where the feds set minimum standards but programs vary widely across the states.

Some states allowed all poor people to access Medicaid, but many states did not and federal law only required that the state Medicaid program cover individuals if they were disabled (later, children were added). Most states covered both poor children and their parents but many did not cover poor people who were not disabled and did not have children. One of the many provisions under the health care reform act addressed this inequity.

Unfortunately the problem goes beyond eligibility for Medicaid -- many people eligible for Medicaid do not take it up. There have been a number of studies on why people do not take Medicaid when they are eligible and it seems to be a mix of lack of knowledge that they are eligible, recent other coverage loss, unwillingness to be singled out as poor, and cost and fear of cost.

I think you said it for me -- "there are a lot of implicit assumptions in that model..." I guess that's where I disagree with the modeling the CDC is doing as I think it's purposefully conservative in assumptions. There's always a high, medium and low, and I think they advertise the low model each time.

Some day, if testing is broadened someehow, all these unknown HIV cases may bring to light the ~incorrect~ assumptions and lead to a higher overall population number.

I know there are alot of different feelings about testing but the fact is if there was mandatory testing AND medication/health care provided AND compulsory taking of the medication the infection rate would go down. I can't find the article, but I remember reading years ago of some modelling based on just this scenario which predicted HIV could be wiped out within a few generations using just existing medications. this was based on all world governments joining in and requiring treatment. If anyone has a link please send it through.

Not everyone Space, what about Haemophiliacs before blood transfusions were tested for HIV?, babies born to mothers who didn't know they were infected until after the delivery?..many were innocent and could do nothing to prevent it.

Not everyone Space, what about Haemophiliacs before blood transfusions were tested for HIV?, babies born to mothers who didn't know they were infected until after the delivery?..many were innocent and could do nothing to prevent it.

ArohaJan

Yes, I stand corrected.However, the vast majority of us (including 'immaculate infections' like mine-since i thought i was always safe ) infected ourselves.

Not everyone Space, what about Haemophiliacs before blood transfusions were tested for HIV?, babies born to mothers who didn't know they were infected until after the delivery?..many were innocent and could do nothing to prevent it.

I get the point about babies being innocent.But people who get HIV through sex are not, in constrast, "guilty".

Anyway we are getting off topic.

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“From each, according to his ability; to each, according to his need” 1875 K Marx

People do not infect themselves. They put themselves in situations that increase their risk of becoming infected. Myself included, but they dont infect themselves. What was the point of this thread again?

Unless you test enough to find out early, about 1/3 of all HIV/AIDS cases aren't diagnosed until years after being infected, when a person finally starts having health problems and seeks medical care. That means that nearly 1/3 of us find out we're positive because we're so sick already that we ended up in the hospital or seeking medical care, with AIDS, starting meds immediately, and hoping not to die.

I know for me, being in the 33% group, this means I have never really understood the worrying the other 2/3 have about taking meds. When viewed as the life-savers that they are, one really doesn't care too much about side-effects - except the side effect of keeping you alive.

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

I know there are alot of different feelings about testing but the fact is if there was mandatory testing AND medication/health care provided AND compulsory taking of the medication the infection rate would go down. I can't find the article, but I remember reading years ago of some modelling based on just this scenario which predicted HIV could be wiped out within a few generations using just existing medications. this was based on all world governments joining in and requiring treatment. If anyone has a link please send it through.

I do not support the idea of mandatory treatment at this time . If a person chooses not to seek treatment for HIV I support that decision . Treating HIV requires a lifetime of dedication , with the current treatments and the cost to maintain them I could see a person choosing not to persue that route . I would hope people come around and value life enough that they choose to to medicate and make the most out of it but my idea of support is not to force anyone into doing what they don't want to do .

Forcing treatment may not be called for but how about adjusting the US treatment guidelines to recommend it? That way its an option that people and their doctors can choose? Instead of how it is now waiting to hit a certain cd4 number.

Forcing treatment may not be called for but how about adjusting the US treatment guidelines to recommend it? That way its an option that people and their doctors can choose? Instead of how it is now waiting to hit a certain cd4 number.

Suggestions are always welcome . My concerns are more about access to affordable care .

Suggestions are always welcome . My concerns are more about access to affordable care .

I agree 10000%. But I don't think we should not chabge treatment recommendations if its determined that they would benefit the patient and community because our medical insurance system has issues. We should be working and advocating change on both fronts.

I hope as more meds move to generic treatment funding programs will be able to treat more people. No one, even those newly diagnosed, should have to wait for treatment.

I agree 10000%. But I don't think we should not chabge treatment recommendations if its determined that they would benefit the patient and community because our medical insurance system has issues. We should be working and advocating change on both fronts.

I hope as more meds move to generic treatment funding programs will be able to treat more people. No one, even those newly diagnosed, should have to wait for treatment.

There has been allot of press lately about the advantages of starting treatment early as well as UAB and its program to do routine screenings for HIV . If the scientific and medical community wants to lobby congress for affordable treatment options for those that choose to be tested and treated I would be very happy to see it ... but I'm not that optimistic about the state of health care in America , its a slow path to progress .

It is slow. I just hope as more treatments become affordable with generics more people could be covered with government programs. Hopefull obamacare will expand services as well. Im not holding my breath but I can hope for change.

Unless you test enough to find out early, about 1/3 of all HIV/AIDS cases aren't diagnosed until years after being infected, when a person finally starts having health problems and seeks medical care. That means that nearly 1/3 of us find out we're positive because we're so sick already that we ended up in the hospital or seeking medical care, with AIDS, starting meds immediately, and hoping not to die.

I know for me, being in the 33% group, this means I have never really understood the worrying the other 2/3 have about taking meds. When viewed as the life-savers that they are, one really doesn't care too much about side-effects - except the side effect of keeping you alive.

I'm with leatherman on this. Well said.

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Diagnosed in May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

TRIUMEQ - VALTREX - FLUOXETINE - FENOFIBRATE - PRAVASTATIN - CIALIS

Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

I definitely agree that it is important for those who are sexually active to be aware of their status, but it has to be voluntary, consensual testing - not mandatory, forced testing. As discussed in another thread, it is important that access to treatment is provided.

A recent newsfeed story that is still posted on poz.com discusses Medicaid expanding coverage in some states for expanded HIV/AIDS programs. The letter that is attached to the article states:

It is imperative that if we want to encourage people to get tested and know their status, that we make sure that they also have access to treatment. Unfortunately, for many people, this is not the case.

First, and foremost, as Ann always says, responsible adults know that it is of utmost importance that they use condoms - particularly if they do not know the status of their partner. Testing and knowing ones status is not going to stop HIV from spreading. Testing, knowing ones status, and receiving treatment also is not going to stop HIV from spreading (although both can have a positive impact) ---- practicing safe sex is the surest way of stopping or severely slowing the spread of the disease ----- "it really is that simple." (Right Ann? )

I know for me, being in the 33% group, this means I have never really understood the worrying the other 2/3 have about taking meds. When viewed as the life-savers that they are, one really doesn't care too much about side-effects - except the side effect of keeping you alive.

But you were living surrounded by AIDS. Why didn't you test yourself regularly, if not because you might have been afraid of HIV and the piss poor treatments at the time. I think I was tested 1-2 times a year, every year from 1986 or so. If you were in routine consistent health care in NYC, the doctors offerred and even encouraged regular testing.

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“From each, according to his ability; to each, according to his need” 1875 K Marx

Why didn't you test yourself regularly, if not because you might have been afraid of HIV and the piss poor treatments at the time. I think I was tested 1-2 times a year, every year from 1986 or so.

wow. you started early. The first Elisa test was in 85 and the western blot didn't come out until 87. The first med AZT wasn't in use until 87 with ddI not entering the market until 89.

Also there was a huge difference in knowledge, treatment, and testing between living in some place like San Fran or NYC and elsewhere. Living in Charlotte NC and Cleveland OH, we were hundreds of miles from the epicenters of HIV and no one even had a clue that the disease had already spread it's tentacles so far out into the country. In 1984 when I was infected in Charlotte, GRID was something happening miles and miles away and the nightly news (the only pre-internet information source) told me it had to do with poppers and bath houses. By the time I began to see an ID doctor in Ohio (Mar 1993) I and my partner were among the first dozen (patient #6 and #7) people even diagnosed with HIV/AIDS in our county. Randy was #22 of AIDS-related deaths recorded when he passed away in 5/94.

I didn't test earlier than Dec 1992 because testing in the mid 80s and early 90s, when it hardly had a name much less when there were no medications for it, and getting a positive result was just a guaranteed death sentence. Knowing for sure that you'd be dead within 18 months or so was a pretty big bummer. As it seemed to be spreading like wildfire, it was just much easier on the psyche to keep living until you began wasting away. Most of my friends who got sick and died in those days hadn't bothered testing either. As I'm the only one left alive from dozens and dozens of my friends in Ohio back in those days, you'll just have to take my word for it that taking a test and knowing you were going to die just wasn't worth the emotional toll.

By the time my partner got sick, which prompted me to get tested, there was only AZT and it was dubious as to how much help that was. Though it made me incredibly sick and I eventually quit taking it, I do have to credit the 9 months that it attempted to thwart my HIV as possibly the reason I'm here today. So technically, I didn't see any reason or bother getting tested until there were meds actually beginning to slow down the epidemic.

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

Hmm. Yeah regional differences. Any way it sounds like the gay 1890s or the Weimar Republic, so long ago now. But at least in the late 80s' I knew many guys who had been tested and were HIV+ and weren't dying in months.

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“From each, according to his ability; to each, according to his need” 1875 K Marx

But at least in the late 80s' I knew many guys who had been tested and were HIV+ and weren't dying in months.

the vast majority of my friends in NC and OH died between 87-95. Usually one of us would be sick, get tested and diagnosed, and then from 6-18 months we watched them waste away or be hospitalized numerous times until they passed away. Sad times.

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

In the US, constraining HIV could be made much easier, but not on a State by State basis. It should be Federal, as the States will never uniformly comply. It could be as simple as legislating that anyone with HIV automatically gets Medicaid, and can therefore access appropriate therapy. Testing aside, as long as healthcare is unavailable, HIV will never be stopped. As the recent studies show, taking HIV meds lowers transmission by about 96%.....so if the US was serious about stopping HIV, we have the means already.

Getting people tested so they actually start therapy is another riddle.

In the US, constraining HIV could be made much easier, but not on a State by State basis. It should be Federal, as the States will never uniformly comply. It could be as simple as legislating that anyone with HIV automatically gets Medicaid, and can therefore access appropriate therapy. Testing aside, as long as healthcare is unavailable, HIV will never be stopped. As the recent studies show, taking HIV meds lowers transmission by about 96%.....so if the US was serious about stopping HIV, we have the means already.

Getting people tested so they actually start therapy is another riddle.

What do you do with the people who don't want to test or start treatment ?

Well surely in the USA people who dont feel secure financially, are working their butts off just to survive, and don't have affordable health care, wouldn't want to test and get a scarey diagnosis.

Its a tricky public information campaign to run in the USA. There is still no sense that health care is a right of all. Its not going to fly - hey get tested and if you are HIV+ and need HAART - the government has programs to help you. Really doubt a lot of powerful people in state and national goverment want to stand by that message.

And now 2010, 2011, that ADAP and Medicare safety net is faltering. What a mess.

This contributes to the stigma of HIV, as not only an STD, but furthermore an avoidable STD thus the guilt and stupidity and immorality of it all, but to boot, a very expensive disease we all know quite a few members of the public resent the government having to pay to treat.

Yet 2 billion a week, (every two weeks?) in Afghanistan, well that's ok.

« Last Edit: June 09, 2011, 08:06:29 PM by mecch »

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“From each, according to his ability; to each, according to his need” 1875 K Marx

What do you do with the people who don't want to test or start treatment ?

for the "don't want to test", I'd test test test anywhere, anyhow. It's the stigma of HIV that prevents getting tested, so fuck that, just test, test, test. At the doctors. At the airports (they already grab our nuts anyway). At public events. At movie theaters. I don't care where. Test everyone.

Once they KNOW their status, they can get treatment (especially if HIV+ = Medicare enrollment), or not at their choice, but at least they'll know they're HIV+. And as we've said in other threads, there's general agreement that "those that know their status" generally DO NOT knowingly pass it on. It's those that DON'T KNOW that spread it around.

This is the only way, absent a cure (yeah, right) that we will STOP hiv in it's tracks. It's been done with TB, and various other viruses throughout history (mandatory vaccinations aren't much different that mandatory testing). No vaccination, no school. That's already in place. No test, no....we'll have to figure that one out.

Sounds extreme, but if you look at what and how we've approached this dillema with other diseases, it really isn't an extreme approach. It's the stigma that's doing this for HIV, and allowing it to propagate so freely.

for the "don't want to test", I'd test test test anywhere, anyhow. It's the stigma of HIV that prevents getting tested, so fuck that, just test, test, test. At the doctors. At the airports (they already grab our nuts anyway). At public events. At movie theaters. I don't care where. Test everyone.

Once they KNOW their status, they can get treatment (especially if HIV+ = Medicare enrollment), or not at their choice, but at least they'll know they're HIV+. And as we've said in other threads, there's general agreement that "those that know their status" generally DO NOT knowingly pass it on. It's those that DON'T KNOW that spread it around.

This is the only way, absent a cure (yeah, right) that we will STOP hiv in it's tracks. It's been done with TB, and various other viruses throughout history (mandatory vaccinations aren't much different that mandatory testing). No vaccination, no school. That's already in place. No test, no....we'll have to figure that one out.

Sounds extreme, but if you look at what and how we've approached this dillema with other diseases, it really isn't an extreme approach. It's the stigma that's doing this for HIV, and allowing it to propagate so freely.

I'm thinking your wild west Aids round up plan is stigmatising . Condoms still seem the best low tech . answer to help control the HIV virus at this time to me . I really cant believe you are suggesting rounding up people with HIV and forcing them to test and treat .